Lung cancer and stigma
People who have lung cancer have to deal with something more than just cancer. That something more is stigma. Stigma describes the negative attitudes that we have toward someone or something that we see as unacceptable or undesirable. It is often based on unfair or inaccurate beliefs.
Breaking down the stigma @(Model.HeadingTag)>
Sometimes stigma comes from fear of a disease or from the fact that a disease is deadly. But lung cancer carries stigma today mainly because of its connection to smoking. Smoking is the main risk for lung cancer (and many other diseases). Research has shown that many people think people with lung cancer should have known better than to smoke and that they are to be blamed for getting the disease. But that view is unfair.
Lung cancer has many causes. Smoking is not the only cause of lung cancer. Other risks include exposure to radon, asbestos and outdoor air pollution. And some people have something in their genes that makes them more likely to develop lung cancer (or their genes may protect them from it).
People who have never smoked can develop lung cancer. Because smoking is so closely connected to lung cancer, even people with the disease who don't smoke can also feel the effects of stigma.
Smoking is an addiction. Most people see smoking as a bad habit that people need to try harder to break. In truth, it is a powerful addiction that is very hard to quit.
People who do quit are still blamed. It takes many years for lung cancer to develop. People who do quit smoking but then develop lung cancer still face the stigma of the disease. Instead, they should be congratulated for quitting.
The goal of anti-smoking campaigns is to promote health, not to blame individuals. The success of these campaigns in reducing smoking rates is something to celebrate and build on. They shouldn't be used to add to the stigma around lung cancer.
Everyone deserves care and support. It shouldn't matter what type of cancer you have. And looking back at what might have caused the cancer isn't helpful – everyone deserves care and support throughout the cancer experience.
How stigma affects people with lung cancer @(Model.HeadingTag)>
Stigma has a serious effect on people with lung cancer. People who smoke may turn away from healthcare at a time when they need it most and it can be most effective. Stigma also makes the hard experience of living with cancer even harder. Research with people who smoke tells us that:
People who smoke may avoid seeing a healthcare professional about their symptoms. The stigma that people feel about smoking can make them reluctant to talk about their symptoms. You may be so anxious about a symptom like a cough that you put off having it checked. This can lead to a later diagnosis of lung cancer, which usually means the need for more treatment and that the treatment may not work as well as when cancer is found earlier. Then people may feel guilty about not reporting their symptoms earlier.
People with lung cancer feel that they don't get the same level of support or compassion from others, including their healthcare team. People feel that healthcare professionals blame them for their smoking history and this affects the quality of treatment they get. They also may find it harder to talk with their healthcare team about their illness.
They blame themselves. Self-stigma, or self-blame, is when you start to believe the stigma that others have about you. People with lung cancer feel more self-stigma than people with other cancers because of the negative beliefs that surround lung cancer. If you're diagnosed with lung cancer, you may not want to tell anyone about your diagnosis because you're embarrassed or you feel that you might be rejected or blamed.
These feelings of self-stigma in people with lung cancer can lead to:
- withdrawing from friends and family
- delaying treatment or not having treatment
- stress in relationships
- increased feelings of guilt, anxiety, depression and anger
- poor quality of life
Coping with lung cancer stigma @(Model.HeadingTag)>
Having lung cancer is hard, but coping with the stigma of the disease makes it even harder. These ideas can help you break down the stigma.
Tell your story to teach other people. You can help reduce lung cancer stigma by letting people know that you have lung cancer and it can affect anyone.
Find a support group. You may be able to find a lung cancer support group in your area or join a general cancer support group. Look online to find others living with lung cancer. These groups can help you talk about your feelings and frustrations.
Recognize and be honest about your feelings. It may be hard to talk about lung cancer, stigma and your feelings. But being honest can help improve communication and make your relationships stronger. Learn more about coping with your emotions.
Remember no one deserves any kind of cancer, including lung cancer. Cancer is a disease, not a punishment. You have the right to be treated with understanding, compassion and support.
Alex Mathieson, MD, FRCSC
Riley KE, Ulrich MR, Hamann HA, Ostroff JS. Decreasing smoking but increasing stigma? anti-tobacco campaigns, public health and cancer care. AMA Journal of Ethics. 2017: 19(5):475-485. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5679230/.
Vrinten C, Gallagher A, Waller J, Marlow LA. Cancer stigma and cancer screening attendance: a population based survey in England. BMC Cancer. 2019: 19:566. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6561035/.
Neal C, Burke Beckjord E, Rechis R, Schaeffer J . Cancer Stigma and Silence Around the World: A LIVESTRONG Report Final Report. LIVESTRONG; 2017.
Williamson TJ, Choi AK, Kim JC, Garon EB, Shapiro JR, Irwin MR, et al. A longitudinal investigation of internalized stigma, constrained disclosure, and quality of life across 12 weeks in lung cancer patients on active oncologic treatment. Journal of Thoracic Oncology. 2018: 13(9):1284-1293. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6291203/.
Ostroff JS, Riley KE, Shen MJ, Atkinson TM, Williamson TJ, Hamann HA. Lung cancer stigma and depression: validation of the Lung Cancer Stigma Inventory. Psycho-Oncology. 2019: 28:1011-1017. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6506363/.
Stangl AL, Earnshaw VA, Logie CH, van Brakel W, Simbayi LC, Barre I, Dovidio JF. The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Medicine. 2019: 17(1):31. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6376797/.
Maguire R, Lewis L, Kotronoulas G, McPhelim J, Milroy R, Cataldo J. Lung cancer stigma: a concept with consequences for patients. Cancer Reports. 2019: 2019:2:e1201. https://onlinelibrary.wiley.com/doi/epdf/10.1002/cnr2.1201.
Lung Cancer Canada. Stigma. Toronto: 2019.
O"Rourke DJ, Lobchuk MM, Ahmed R. Shared attributes of responsibility and emotion in patients with lung cancer and family caregivers. Oncology Nursing Forum. 2018: 45(1):33-44. https://onf.ons.org/onf/45/1/shared-attributes-responsibility-and-emotion-patients-lung-cancer-and-family-caregivers.